Tourettes, Tics, and the Seat of Creativity

“I saw more theatre in the first week of the Edinburgh Fringe than I’d seen in my life.”

Jess Thom has Tourette’s Syndrome, a neurological condition which causes an array of verbal and motor tics; her most regular tic is the word “biscuit” – she can tic biscuit hundreds of times an hour – but “hedgehog” and “cats” are not far behind. While some of Thom’s tics are a bit sweary, she’s one of only a small percentage of people with Tourettes to do so and ‘fuck’ is very much the high-hat to ‘biscuit’s’ bass drum. Her motor tics involve the repeated hitting of her chest and her ‘chaotic’ way of walking means she now uses a wheelchair to get around.

As a performer, Thom works to address the stereotypes that surround Tourette’s and to promote accessible and inclusive theatre. She’s the co-founder of Touretteshero, which takes the form of a blog documenting her condition and a costumed alter-ego whose mission is to reclaim Tourettes from the assumptions that surround it. The week before we meet she performed at the Unlimited Festival, a showcase of work by disabled artists at the Southbank Centre, in her superhero guise alongside Captain Hotknives, a bipolar musician, with him riffing to her tics.

In 2012 she published a book based on her experiences – Welcome to BiscuitLand – in which she celebrated the humour of living with the condition, of inhabiting this world shaped by her tics, and this August she took her first Fringe show, Backstage in BiscuitLand, to Edinburgh. The show – which she performs with puppeteer Jess Mable Jones – is an attempt to explore and explain the condition on stage while at the same time revelling in the spontaneity of it, the poetry of her verbal eruptions.

One of the things she discusses is how, in the past, visits to the theatre have left her feeling unwelcome and humiliated having been asked to isolate herself from the rest of the audience. She wanted to create a show and space which was open to everyone, a ‘relaxed’ performance where no one needed to worry about making extra noise. It’s a good word that – relaxed – a lot of theatre could do with being more relaxed; the emphasis on etiquette in some quarters (I’m looking at you Theatre Charter) seems to go against the spirit of what theatre can be and can do.

Biscuitland also looks at inclusivity in the theatre and what that means. “Inclusive elements work best when they’re included in the development of the show.” Graeae, she says, do this particularly well, with “the access stuff really integrated into the performance.” At the Southbank they had a BSL interpreter for one of the performances and the nature of Tourettes meant that she became part of the show. “I ticced that it was liked the Krypton Factor for BSL interpreters. We interacted a lot. My tics made the BSL interpreter touch her tits a number of times and swear at the audience. That wasn’t necessarily a choice I had but tics respond to the environment. One of my tics was particularly complex and I remember looking at her and thinking: good luck with that one!”

“It goes back to why we created Touretteshero as an organisation and as a character, because before that I’d often viewed my tics as a problem, something I would live my life despite; recognising they have power and value has been really important to me.”

At the beginning of the Fringe, Thom made the decision that she would go and see work but on her own terms: no more being shunted into sound booths. So she contacted the performers beforehand to explain about her condition ahead of time and make sure they knew what to expect. “One of the things that I hadn’t anticipated, as a result of the show, was all these amazing invitations to see work from performers and directors.” The shows Thom saw included Secret Theatre’s A Series of Increasingly Impossible Acts – “the cast had seen Backstage in Biscuitland and had invited me to be there” – musical comedy acts Access of Awesome and Jonny and the Baptists (“who were amazing”) and Australian comedian Josh Ladgrove’s Come Heckle Christ. Thom found that having conversations beforehand was the key to making the experience work for everyone. There have been times, at comedy shows, where she’s “felt overly focused in a way that feels uncomfortable, where assumptions and judgements have been made or Tourettes has been used as a cheap joke.” There’s a difference between made to feel welcome and made to feel the focus of the show.

Her experience in Come Heckle Christ was mutually rewarding for both performers. “I met him beforehand and explained that I was confident I’d be able to heckle but made it clear that it’s not proper heckling because I can’t stop it. The introduction of Tourettes into that show took it somewhere it hadn’t been before and he invited me back to see it again.”

As Thom has become more comfortable and confident with her tics, she’s come to celebrate their creativity. “What’s amazing about tics is they pick up on very random things, which I wouldn’t necessarily notice and they can start a dialogue with my surroundings. They say things that I might not consciously be aware of; tics add a new layer of relevance. At home, where things are familiar, the relationships between my tics and the things around me build over time. Every night, as I get ready for bed, I will shout at the lamppost outside my bedroom window before I go to sleep.”

When you’ve told a lamppost that its father is a socialist it invariably affects the way you view the world and the things around you. She says that one of the gifts of her tics is that “I get to notice things that I might not have paid much attention had a part of my brain not started this weird and often very funny interaction with them.” She also has a fairly intense relationship with her support worker Matthew’s potted geranium. The fact that tics respond to environmental triggers can make be rewarding and exciting though there are also challenges. Flying with Tourettes is one of them “because there are things you really shouldn’t say as you’re going through airport security…”

Thom is thinking of touring Backstage in Biscuitland internationally and is curious at how her tics will respond to the experience. “So many of my tics respond to what’s happening around me, culturally, environmentally, and if we went to other countries I’d be exposing myself to new cultural references – and once you add that into your experience bank it’s likely to come out in tic form.”

Jess Thom: Touretteshero

At some point in our conversation, I remark that her tics have great comic timing, but there’s more truth to this than I realised at the time. In his writing about Tourette’s, Oliver Sacks talks about “ticcy witticisms” and Thom’s tics are often playful and mischievous; her more complex tics are image-rich, like wonderful word salads. She keeps a record of the most deliciously surreal of her tics on the Touretteshero blog: “Aladdin armadillo contraband,” “dramatic owl flashmob and “a penguin bathed in butter” are some of my favourites.

Sacks believes that Samuel Johnson had a form of Tourette’s (it’s a spectrum disorder and presents itself in a variety of ways) and it has been suggested that Mozart did too, though this is less widely accepted; the subject of Sacks essay, Witty Ticcy Ray, channelled his motor tics into music: they made him an excellent drummer.

Her tics have a real creative energy; her fireworking neurotransmitters can open up doors. “What I’m interested in now,” says Thom, “is in writers, performers, comics, people who go in search of that, who have chosen to bring that into their life.” Having seen Nina Conti’s film about the psychology of ventriloquism, Her Master’s Voice, she was inspired to conduct an experiment. “There’s a conversation between Nina’s Monkey and Ken Campbell in which they talk about this idea of the gatekeeper of the mind and Ken says to Monkey that he frees Nina’s gatekeeper.” This idea of the gatekeeper caught Thom’s attention. “Monkey disarms Nina’s gatekeeper as Tourettes does mine.” She met up with Conti to explore the idea further. “The plan was that the four of us [Conti, Thom, Monkey, and Thom’s tics) would have a conversation about creativity but what started to happen was that my tics and Monkey had a conversation and when Nina looked back at the video she was surprised by the things that Monkey had said.”

Perhaps unsurprisingly, Thom is a great believer in the power of language; she stresses the need to be more careful with words when describing disability, to avoid the word “sufferer,” to avoid the phrase “wheelchair-bound,” and feels that by being mindful of the language used to talk about all forms of disability, perceptions can be shifted. Tourette’s is a condition which is often misunderstood and subject to assumption – that it’s primarily a swearing disorder being the most common one. Thom is keen to welcome more people to Biscuitland in an effort to counteract this. Having successfully taken her show to Edinburgh, “sharing it with other audiences is something we’d like to continue.”

Natasha founded Exeunt with Daniel B. Yates in 2011 and remains responsible for the overall editorial management of the site. Since March 2015, she's been joint lead critic for The Stage, along with Mark Shenton. She has also contributed to Time Out, the Guardian online, The Space, and The Independent, and she reviews books for The Observer. An occasional writer of fiction, one of her stories was shortlisted for the 2010 Bristol Short Story Prize.